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2017 Diagnosed-- A Place To Share "Whats Next"

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  • Gigilala
    Gigilala Member Posts: 57
    edited December 2017
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    during radiation I didn't use any deodorant

    Just a daily shower

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    Butterfly1234- I’m glad Arimidex is doable because that will be my next step and Prolia injection with no SE .... yay!

    Congratulations to Linwentz again!

    I only did 2 radiation so far so good, it is too early to tell. I will keep up with the protein and it might not be easy for me because I am terrible in counting protein. Can’t keep track what I put in my mouth.


  • Gigilala
    Gigilala Member Posts: 57
    edited December 2017
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    Paulettek: I just finish radiation

    I used aloe Vera every day it really helped my skin

    Good luck

  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited December 2017
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    Congrats Linwents!!!

    Thank you all for the warm welcome!

    I know every one is different but here are a few things that have and are helping me (not in any particular order:)

    1. Shea Moisture products for hair and skin. CVS, Walgreens. Grocery stores

    2. Lavender scented minersl salts for joint and muscle aches. Add to very warm bath - it's heavenly. CVS

    3. China Gel also for muscle aches. I get it at my yoga studio but you can buy it online.

    4. Yoga has helped with my flexibility and range of motion.and the tightness I had in my Dx arm. I also try to do light weights and treadmill when I can.I've read that exercise is one of the proactive things we can do to help ourselves. When my body needs rest I take a day or two off.

    5. This is a personal choice but I've cut way back on my wine drinking. My GERD is much better, I think I look better, and my intestinal track thanks me. It's not easy for me. I do allow myself an occasional glass of wine. Again a totally personal choice.

    6. I take all the necessary vitamins and try to eat healthy (most of the time).

    It's been almost a year and I try to appreciate every day. Some times I do forget and let the small stuff get to me. I do fear a recurrence but I try not to dwell on this. I reread Eckart Tolle, The Power of Now, whenever I find myself losing my way spiritually. I pray for all of my sisters and brothers whose journey is much more difficult than mine.

    Blessings and much love Heart


  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    Butterfly- I agreed with you, I’m trying to protect my skins with lotions due to chemo really dried up my skin, once it gets back to normal I will go back to my regular body lotions, which is E&O.

    I’m trying to eat health and go for organic as much as possible. It is expensive but our health is more important. Will try to get into some kind of exercise program after I finished my radiation. Meanwhile I am doing my walk 5 times a week.


  • butterfly1234
    butterfly1234 Member Posts: 2,038
    edited December 2017
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    Walking is great! Anything that keeps us moving.

  • Rhyfelwr
    Rhyfelwr Member Posts: 52
    edited December 2017
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    Thank you for the invite. Here I am.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2017
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    Rhyfelwr-- hey glad to see you here!

    I finished rads about 10 days ago. Still applying calendula lotion twice a day to the still tan/pink skin


  • Georgia1
    Georgia1 Member Posts: 188
    edited December 2017
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    DodgersGirl, I did want to ask you about the "tanning." Some discoloration showed up in one spot on Friday (day 10) but it looks more like a very light purple or brown bruise than a tan. Does that seem normal to you? The tech said it was but I don't see my MO again until Weds. And it happens to be in a place where the lower part of my bra strap hits my breast.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2017
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    Georgia1- I think I had a couple of spots that could resemble your description. My skin now looks tan, pink like new skin, and regular looking skin.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    Just wondering anyone have Lymphedema problem when you’re doing radiation? I only did 2 sessions but I can feel my fluid is starting to build up. I’m using my flexitouch pump, I just didn’t want to tight up my chest, worrie it might irritate my breast or underarm.


  • castigame
    castigame Member Posts: 336
    edited December 2017
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    Paulette,

    I was told no flexitouch pump during rads. I was concerned about not being able to use it. Increasing the compression sleeve hrs helpmed quite a bit. And more exercise. My case it is just walk.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    hi Mimi, I spoke to my RO he said I can use my pump on the first two weeks. I will double check again tomorrow just to be sure. Thank you.


  • Rhyfelwr
    Rhyfelwr Member Posts: 52
    edited December 2017
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    PauletteK, my MO was very insistent that I get evaluated for lymphedema early, and I was given a compression sleeve to wear. That is supposed to keep fluid build-up in my arm to a minimum. Do you have something like that, or is that the purpose of the pump? I've been trying to be good about wearing the sleeve.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    Rhyfelwr - I have spent couple month with lymphedema PT, I got fluid under control before radiation. I have my sleeve and flexitouch pump which is better than manual massage. I usually wear my sleeve 6-8 hours and I will do that longer if needed.


  • illimae
    illimae Member Posts: 5,577
    edited December 2017
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    dodgersgirl, the cabin is in West Texas near Big Bend national park, the view and night sky are amazing. DH posted a meme recently on FB that said “I want to live a life I don’t need a vacation from” and that’s our plan. (Pic below)

    Castingame, organic is right and being 35 minutes from the nearest paved road means very little traffic :)

    Legomaster, nice to see you! Congrats on the milestones!

    image

  • castigame
    castigame Member Posts: 336
    edited December 2017
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    Illimae, 

    It is beautiful.  I see your family including dogs loving it. 

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2017
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    illimae-- great photo. Looks like a wonderful place to enjoy life!

  • Rhyfelwr
    Rhyfelwr Member Posts: 52
    edited December 2017
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    Is anyone here done with rads? I am just wondering how long the burns linger. I am 17/20, and it is finally beginning to get I-don't-want-to-wear-clothes painful, mostly in the spots that they stopped radiating when they started boosts last Friday. I mean, do I need to go out and buy some more adaptive clothing, or will I be fine just sitting at home for a few days and waiting it out? "I won't be able to come to work today, supervisor, because I can't put on any clothes....."

    No blisters, by the way. Just painful. So I may just be a big baby about the whole thing.

  • 53nancy
    53nancy Member Posts: 295
    edited December 2017
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    Rhyfeher, you are not being a baby! You have been through a lot! I have been able to wear bra and t-shits up til now. Today, I have my last rads and afterwards I am going no bra and large tops that I picked up at a thrift shop. I will use a soft cloth under my breast to avoid skin on skin contact, and up my lotioning. Rash has spread now and very itchy. Kee strong - you will get through.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2017
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    Rhyfelwr-- my RO said it can take up to 2 weeks after rads for the skin to heal Then, like magic, skin is ok most of the time

  • tlfrank
    tlfrank Member Posts: 76
    edited December 2017
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    Rhyfelwr - I'm in a substantial amount of pain in my armpit. I have a dark line, where the beam glazed my skin. I cannot really move my arm comfortably at all. Yesterday the nurse gave me a topic anesthetic called Regenecare-ha - Maybe you can get some from your RO office.

    2 more boosts to go for me.....

  • illimae
    illimae Member Posts: 5,577
    edited December 2017
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    it took about 2 weeks after final rads for my skin to heal and during that time I did miss a couple of days at work because I couldn’t even wear a sports bra due to pain and peeling. My RO gave me a sheet of something like moleskin to cut and place between my skin and bra which helped, you might ask if they have some. I also bought some cheap but soft tank tops from Walmart to wear around the house. It will get better, hopefully quicker for you.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited December 2017
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    My RO gave me Tefla pads to apply over the peeling skin. Tefla did not stick to the new skin but was held in place with aquaphor. That protected my skin from having something touch it and pulling off new skin plus the Tefla pads protecting my clothing so none of the lotions stained the clothes

    I was also given Radiagard lotion that had lidocaine in it to offset any pain.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    I had 3 session of rads my skin is holding up but I worry about lymphadema because I noticed my underarms has some swelling. Anyone has that problem? I’m doing manual massage hope it helps drain some fluid.

    Wow, I’m getting worries to read about pains and peeling, when would this start the pains and peeling?

    Also what is boosts? I should have 5 boosts on the end.


  • tlfrank
    tlfrank Member Posts: 76
    edited December 2017
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    PauletteK - I think everyone reacts differently. I was pink from the get go....and now am quite uncomfortable but I'm very fair skinned, blonde / green eyes... I didn't have my lymph nodes removed, but they did radiate them. My advice would be to lotion up frequently and massage as long as it's comfortable. Boosts are treatments that specifically target the tumor bed. They'll seem exactly the same as the regular treatment but the beam is concentrated to a smaller area.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    tlfrank - thanks for the info, how many sessions do you still have? Hope things will get not get worse for you. 🙏🙏


  • Sydsym
    Sydsym Member Posts: 10
    edited December 2017
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    i just finished 28 rounds of radiation last Thursday.. Whoohoo! And that finishes all my treatments. Just got my script for the arimidex yesterday and I start that at the beginning of the year. The area under my right breast is very, very dark and red (I’m a fairly light skinned black woman) so it’s very noticeable. It isn’t painful as much as tight at the moment so we’ll see if I start extreme peeling over the next few weeks. Like Butterfly, I do yoga, light weights and walk at least 5 miles a day. I use a mix of calendula, aquaphor, palmer’s cocoa butter and aloe vera gel on my skin and so far so good. I’m going to start next year in a very good place. ThumbsUp

  • 53nancy
    53nancy Member Posts: 295
    edited December 2017
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    Paulette, you will get through. We found the three and a half weeks of travelling went fast but sometimes the individual days seemed a week long! I had my last rads today, with no serious side effects so far. Eating more protein and using the creams were half the battle, I think. Now we get to stay at home and rest, rest, rest, then full speed ahead into the new year. Keeping you in my thoughts.

    Sydsym, like you I feel I will start the new year in a good place. I am not going to live my life worrying about cancer, but will always be aware of the possibility of recurrence. I will deal with it if and when the time comes. All the best in your healing journey.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited December 2017
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    Congratulations Nancy!!! You are on the other side of the fence now. Could I ask you what kind of th cream did you use? Currently I am using Miaderm most of the time, bedtime I use Aquaphor.

    Sydsym - congratulations! It is such a long journey isn’t it? So your skin is getting tight do you have any swelling ?